Baby Abigail, My little Lily Bear
Hello Everyone, I would like to start off by saying thank you for all of your posts. I’ve been reading them on and off for at least six months now. Sometimes they bring comfort and joy, sometimes knowledge, and I will admit, many times I have wept uncontrollably for you and your children (and maybe […]
Continue Reading →Hello Again Everyone (Update on Miss Nayana)
Hello Everyone it’s been awhile since my last post and I apologize for that I was just very busy lately. But anyway I’m back again with more info and more pictures of Nayana. Well I’m so happy and proud that my niece celebrated her first birthday on May 23 rd this year! She has grown […]
Continue Reading →Just when you least expect it…
Mia has had a runny nose on and off for the best part of a month and a cough for a last week or so. She hadn’t seemed too miserable with it and wasn’t running a fever but on Saturday morning, seemingly out of the blue, she had her second full-blown seizure. It followed exactly […]
Continue Reading →Isabella N
Hi Everyone, I’ve been posting comments and reading all your stories and i feel that it’s time to share ours. My daughter was born on Dec 10, 2010 via c section with no complications besides being small. She was 2.22kg born at 38 weeks. She came home with us after 3 days and boy was […]
Continue Reading →Mia’s First Seizure
From the first time we heard Mia’s diagnosis and read through the seemingly endless list of possible complications that Wolf Hirschhorn can present, the one thing that made my blood run cold with fear was the thought of having to witness my beautiful baby daughter having a seizure. On Sunday evening I fed Mia her […]
Continue Reading →Seizures??
I wanted to add a pic of my little guy and also had some questions about seizures. When did your children start having them and what kind are they? I have heard of some kind of test they can do while the child is sleeping to check brain waves or something. It just seems that […]
Continue Reading →The Seizure
Up to this point, we’ve been fairly fortunate with Kendall and seizures. In fact, her seizure activity had been limited to a slight loss of balance and a few seconds of regaining her whereabouts. At least until last weekend…
Continue Reading →Every time is like the first time
I got a little discouraged this week. This April would have made Taylor 2 years free of seizures. Taylor had a seizure on Tuesday evening of this week and I swear every time is like the first time all over again.
Continue Reading →So Seizures…??
So Seizures..wow Our first experience was just over a month ago, very harrowing indeed. We knew to expect this seizure stuff some day but never expected the first one to be so…BIG! Eve was given her 6 mth immunisations at 9.30am and at 3.20pm that day her seizure started, Eve was with my wonderful and very switched […]
Continue Reading →Seizures :(
Just wondering about everyones experiences with seizures? Sabrina had her second a couple of days ago and spent another two nights in hospital. This one was alot like the first, started with a blank sort of stare followed by twitching in her face, then her body too. I called the ambluance straight away and got […]
Continue Reading →Tanner has entered the building
Hi everyone, I came across this blog only days before our WHS gathering at Lauren’s house last Saturday and we talked a lot about it there. It took me a week but I finally made it. What a great idea!!! I’ll start by introducing our family to those of you we may not have had some […]
Continue Reading →Karly
hi everyone! my name is Kaylin and i am mom to Karly 22 month old with WHS. and mom to joseph 4 year old typical trouble maker. 🙂 sounds like my daughter has a lot of similar reflux issues and it is very common after a bolus feeding for her to want to vomit. she […]
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